My journey with SMA Type 1

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Logan’s surgery info/update

We made out to St Louis Childrens Research Hospital a bit earlier this evening. We met with the same anesthesiologist we did the gust time. He will be working on the surgery. Dr. Rosenbaum had already spoke with him and several other team members earlier this week. They are all in agreement with how to work the surgery.

Logan’s surgery for a g-tube with button is scheduled for 8:45am. Check in is at 7:15am. He cannot have formula past 1:45am and no Pedialyte past 5:30am. The surgery is scheduled for 2 hours conservatively. They explained they will put him under with a pressurized valve and make sure he is stable. If he isn’t then they will switch to having the machine breathe for him and continue with the surgery.

We were told by several doctors to not be surprised if he is on bipap for 24/48 hours. However everyone is very hopeful he will wean off quickly and easily.

Plan is to be transferred to PICU for the first 24 hours of recovery, but no matter where we are we will be in full isolation mode. All doctors and nurses will be required to wear a new gown and masks when entering the room.